Symptoms and Diagnosis of ME/CFS in Children

Children and adolescents with ME/CFS mostly have the same symptoms as adults. Some differences are:

Children, especially adolescents, with ME/CFS have orthostatic intolerance (dizziness and lightheadedness and other symptoms that are triggered when standing up and sometimes also sitting upright) more often than adults. It is often the most unbearable symptom and may make other symptoms of ME/CFS worse.

Sleep problems in young children may show up as a lack of their usual energy. In adolescents with ME/CFS, sleep problems may be hard to detect, as sleep cycles change during puberty. Many adolescents begin to stay up late and often have trouble waking up early. The demands of classes, homework, after-school jobs, and social activities also affect sleep. Common sleep complaints in children and adolescents with ME/CFS include:

Difficulty falling or staying asleep

Daytime sleepiness

Intense and vivid dreaming

Unlike adults with ME/CFS, children and adolescents with ME/CFS do not usually have muscle and joint pain. Yet headaches and stomach pain may be more common in this age group. Younger children may not be able to describe the pain well.

In children, particularly in adolescents, ME/CFS is more likely to start after an acute illness, like the flu or mononucleosis. Sometimes, ME/CFS in children might begin gradually.

Diagnosis of ME/CFS in Children

As in adults, symptoms of ME/CFS in children and adolescents may appear similar to many other illnesses, and there is no test to confirm ME/CFS. This makes ME/CFS difficult to diagnose. The illness can be unpredictable. Symptoms may come and go, or there may be changes in how bad they are over time.

A diagnosis of ME/CFS requires at least 6 months of illness. However, children and other patients should be seen by doctors and get support as soon as they become ill. In other words, a child with some or all of the symptoms of ME/CFS should not wait for months to see a doctor. This 6-month period is used to complete laboratory tests and other activities, including follow-up appointments, to check for other illnesses that have symptoms similar to ME/CFS. The 6-month period also allows time for improvement for children with illnesses that have symptoms like ME/CFS, but that do not usually last as long as ME/CFS. It is also important that management of symptoms begins before 6 months have passed, and that support and accommodations for children in school are considered and implemented during this time.

To diagnose ME/CFS, the child’s doctor may undertake the following:

Ask about child’s and family’s medical history, including a review of any medications and recent illnesses

Do a thorough physical and mental status examination

Order blood, urine or other tests

To get a better idea about the child’s illness, the doctor may ask many questions. Depending on the age of the child, the questions might be asked of the patient, parent/guardian, or both (together or independently). Questions might include:

What is the child able to do now? How does it compare to what the child was able to do before?

How long has the child been ill?

Does the child feel better after sleeping or resting?

What makes the child feel worse? What helps the child feel better?

What symptoms keep the child from doing what he/she needs or wants to do?

Does the child ever feel dizzy or lightheaded? Has the child been falling more often than before?

Does the child seem to have trouble remembering or focusing on tasks?

What happens when the child tries to do activities that used to be normal?

Parents/guardians and patients may want to keep a journal for their ill child. This could help patients and families remember important details during their healthcare visit. Keeping track of child’s activities and what leads to worsening of child’s symptoms can help identify the effects of the illness on daily activities.

Doctors might refer patients to see a specialist, like a neurologist, rheumatologist, or a sleep specialist, to check for other conditions that can cause similar symptoms. These specialists might find other conditions that could be treated. Patients can have other conditions and still have ME/CFS. However, getting treatment for other conditions might help patients with ME/CFS feel better.

A number of factors can make diagnosing ME/CFS more difficult. For example:

There is no laboratory test to confirm ME/CFS.

Fatigue and other symptoms of ME/CFS are common to many illnesses.

The illness is unpredictable and symptoms may come and go.

The type, number, and severity of ME/CFS symptoms vary from person to person.

When diagnosing ME/CFS in children and adolescents, it is useful to remember that:

Children and adolescents cannot always accurately describe their symptoms or how they feel.

Parents may describe their child’s symptoms differently from how the child describes his/her symptoms.

Children with ME/CFS may miss school, which may be mistaken for school phobia. But unlike those with school phobia, children with ME/CFS are still ill and inactive on weekends and holidays. They may not be able to do their hobbies and take part in social activities as they did before the illness. They also may have a problem completing school assignments within the usual time. This might be a result of problems with thinking, learning, and memory caused by the illness.

Disclaimer: This website is for informational purposes only. The information provided on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.